Cured of a Rare Leukemia, Patient Endows a Fellowship at UCSF

How did you find out you had leukemia?

I was diagnosed on July 1, 2008. I had been feeling poorly for weeks. I had symptoms like fatigue, loss of appetite, mild fevers, a mild cough and achiness. I kept checking in with my primary care doctor [in an HMO]. I was going in almost weekly, and he kept saying it's a viral syndrome. But I wasn't getting any better. I knew there was something going on.

I went to see another doctor outside of the HMO, who said I should ask my primary care doctor to order blood tests. Then one day I was rinsing my mouth after brushing my teeth and a purplish, black clot of blood came out, the sort you'd see if you had a tooth pulled. It just so happened I had an appointment that day to see my primary care doctor. So I told him again that I wasn't feeling well, that I'd been short of breath and was having night sweats, which I knew could be caused by some kinds of blood cancer. I asked him, "Do you think I might have cancer?" He said, "Oh no, you don't have to worry." But I asked him to order blood work and he agreed to do it.

I was driving back to my home in St. Helena and all of a sudden my gums started to bleed profusely. I called my [non-HMO] doctor and he told me to come right over. As soon as I got to his office, he began packing my gums with gauze and called the HMO to get the results of my blood tests. The tests showed my platelet count was 12,000.

Is that low?

Oh yes. The normal is around 140,000. He said, "Nancy, you've got to get to the hospital immediately. You're going to need a blood transfusion." At the emergency room, the doctor told me I probably had leukemia. I was admitted and got a transfusion of platelets and then they did a bone marrow biopsy, which confirmed I did have leukemia.

Did you know then it was APL?

It took a few days to determine that. The oncologist in Napa told me that if it turned out to be APL that would be our first break because it's curable and you don't usually need a bone marrow transplant. When I got the diagnosis, I said I wanted to go to UCSF for care. So the oncologist contacted Dr. Lloyd Damon, director of the Hematology and Blood and Marrow Transplant Clinic at UCSF. After a few days a bed opened up and I came to UCSF to start the treatment that would save my life.

What was that treatment?

It's a process that takes nearly two years. It starts with what they call the induction, an intense form of chemotherapy where you are in the hospital for seven weeks or longer. You can't go outside because you can't be exposed to germs or anything. And because your platelets are low you're prone to bleeding. The doctors and nurses continually warn you not to bump your head or trim your cuticles or do anything that might cause you to cut yourself because you could bleed out. I don't know if I really grasped what could happen.

So you were being given chemotherapy?

I was getting one drug, daunorubicin, intravenously and taking another drug, called all-trans-retinoic acid or ATRA [which is a relative of vitamin A], in pill form. From the get-go it was one hurdle after another.

What do you mean?

This particular chemotherapy cocktail has a risk of various complications, including blood clots and bleeding in the brain. About two and a half weeks into my treatment, I started feeling a very mild headache and then the pain became so intense it felt like someone was taking a 1,000-pound baseball bat and pounding on my head. They did a CT scan and Dr. Damon told me I had two hemorrhages, one on each side of my brain. I remember him standing over the bed, checking me neurologically and asking me to spell "world" backward. And I said, "D... L...," and I don't even think I got to the "R" before asking him, "Can't you pick an easier word?" They moved me to intensive care.

Did you have to have surgery?

You know, that is the miracle. Dr. Damon had told me they might need to drill holes in my skull to relieve the pressure, but they didn't have to do it. I was given a high dose of prednisone to get the swelling in my brain down.

You're lucky.

Oh my gosh, I thank God every day. Bleeding of the brain is very, very dangerous.

Once you recovered from that, what happened?

Then I had to continue my treatment and unfortunately, the all-trans-retinoic acid can cause a side effect called ATRA syndrome, which is another thing you don't want. It causes a buildup of fluid in your lungs. I gained about 20 pounds of fluid that filled my chest and lungs. I had a fever. It was almost like pneumonia. The pressure on my chest made it hard to breathe. I had to be on a diuretic. And then the antibiotic they gave me for that made me break out into a rash that felt like a sunburn.

All these problems must have been very discouraging.

Knowing I had more than a year of treatment ahead, it was hard for me to see how I was going to make it. Just after the brain hemorrhage I asked my doctor, "Am I going to die?" And he said, "No, you are not going to die." I was ready to give up, but he gave me hope.

Did things improve?

Yes, the problems did dissipate. They had warned me that any complications would happen in the first seven weeks of treatment. After that, I tolerated the later cycles of chemo pretty well.

There's also an unusual drug used to treat APL, right?

They use arsenic. I was given it at UCSF and then for 10 weeks on an outpatient basis once I went home.

What did you think when your doctor told he wanted to treat you with arsenic?

I was scared to death. But when you hear from a top expert in the field that this will enhance your chances of a cure, then you have to do it. And you know what? I had no side effects from the arsenic, which was amazing to me. In fact, during the time I was getting the arsenic infusions I was actually feeling pretty good.

But arsenic can cause heart problems.

To protect my heart, every morning before the arsenic was administered I would have to get an EKG to check my QTc [a measure of heart rhythm.] If it was too fast, I could not get arsenic that day.

All told, how long did you have to do treatments?

I had three cycles of chemo, where I'd be in the hospital getting chemo for two weeks and then be off for a month to recover. Then I had to keep taking ATRA, one week on and one week off, for a year. I wasn't a big fan of it, but Dr. Damon said it was an extra insurance policy to make sure we keep all my cells in marching order.

Were you being monitored during that time?

They were checking my blood every three weeks, checking the platelets, white blood cells [for signs of infection] and my liver [for signs of toxicity].

At what point did your platelet count return to normal?

My platelets were normal after the first treatment. When I left UCSF the first time they were over 250,000 and they did a bone marrow test after I was done with treatment to be sure.

So five years out, are you considered to be in remission or actually cured?

I am cured.

Some studies have suggested this type of leukemia may be more common in people with a Latino background?

That's right. I'm half Mexican and if the link with my ethnic background had been recognized I might have had a faster diagnosis. I'm trying to alert the Latino community to their risk and get it out into the media. That knowledge might be lifesaving information.

I understand you also have endowed a fellowship at UCSF?

It's the Nancy White Gamble Hematologic Malignancies [Endowment] Fund. It's to support training future fellows who will be training in blood-related cancers. I could not walk away from this whole experience without giving back my thanks and gratitude to the doctors and nurses. The first fellow started in October. I am thrilled to meet this person.